About Me

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly,
mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.”
-- Baruch Spinoza

Sunday, February 11, 2007

Reasonable People

Ralph Savarese’s book Reasonable People: A Memoir of Autism and Adoption is a heart-wrenching memoir of autistic abuse, abandonment, adoption and durable love. Ralph, who is an English Professor at Grinnell College in Iowa writes about his family’s arduous journey to adopting DJ who has been separated from his “neurotypical” sister, Ellie. Their biological mother, Rhonda, a substance abuser, is in and out of their lives and later creates obstacles in the process of adoption. During Rhonda’s absences, Ellie was left to assume care of DJ until she was taken to move in with her biological father. The father, who is self-described as “an unemployed former drug user,” marries an HIV positive woman who takes in Ellie, in order to rebuild a “normal” life – a life without DJ. DJ, in turn, is subjugated to the perilous world of foster care. The split between biological siblings is the constant source of pain for both throughout,and we view it through DJ’s transcripts and Ralph’s re-telling of events.

Emily, Ralph’s wife, is an expert on inclusion and had been working with DJ. One evening she brings DJ their home. In a charming early encounter, we watch as Ralph falls in love with DJ when they lock foreheads and stare at each other -- this is their first “connection.” Soon after, Ralph begins to engage DJ in a tickle game which becomes their early pathway to life and love together.

As the story opens, Ralph foreshadows the stress to come by illustrating the brief reunion of DJ and his biological sister, Ellie, and how the shadow of sorrow follows their temporal happiness:

“With great difficulty Ellie pulled DJ uphill. At six, her birth brother, whom she hadn’t seen in nearly three years, understood rollerblading to be a matter exclusively of somebody else’s exertion. While you labored, he’d stand with his legs a bit too close together, his chest a bit too rigidly upright, his eyes more than a bit too captivated by whatever birds were darting overheard or leaves were rustling in the wind….With amazement, we watched the girl effortlessly reassume the role of facilitator as she directed DJ around the park….Even more significant, she refused to be saddened by what her brother couldn’t give her after their long separation – what he couldn’t say or do. But then he had given her something. In fact he’d stunned her, stunned all of us, when just before we were to meet in the city, he’d spotted his sister a full block away, run up to her, and like a character in a French movie, placed his hands on her shoulders and kissed her on both cheeks…The girl seemed to ride the gesture right into the afternoon, as if it were pulling her.”

It pulls us too. We can’t help but root for the reconnection of DJ and Ellie throughout the book. The anguish that DJ experiences as a result of separation is increasingly evident as he begins to acquire language through Facilitated Communication which Ralph notes, “I’m with Margaret Bauman, a neurologist at Harvard who appears in Autism Is A World and who is quoted in the Washington Post article as saying that FC was “oversold in the beginning” and then, like the proverbial baby, “thrown out with the bathwater.” Ralph shows the belabored task of teaching literacy to DJ and it how it opened up a whole new world of psychological stress and awakening. “Language meant anxiety,” said Ralph:

“Language meant fear….Put provocatively, language is the group home of life. By the time an infant recognizes his separation from his mother and can speak of her as a discrete object, he is already racing toward the lonely singularity of adulthood.” And,

“Ellie became the name he’d track like a bounty hunter through the swamps of longing…”

As DJ’s literacy unfolds, we begin to witness increased aggression and violence at home and at school, and we learn more of his own abuse in foster care. Ralph refers to DJ’s mind in these references to abuse like a “Mission Impossible communiqué, combusting immediately after it’s read.”

Savarese’s parlance about DJ, and the recapturing of a traumatic past through FC, continues to suggest that we need to look longer and harder at cognitive disability and all disabilities. The violence and aggression, alongside Emily and Ralph’s perseverance to help DJ - through the post-traumatic-stress, through trials of medications, through the rocky road of mainstream schools and inclusion (even though inclusion worked to DJ's and his classmate's benefit because of the Savarese's) - all communicate the challenge of autistic behaviors while suggesting that we must always consider that there is more to our autistic children than meets the eye; that autism does not render a person unaware. In fact, we sense where this autism journey might take us early on when Ralph states in reference to raising DJ, “To us there was no such thing as unbridgeably distant.”

There may be no such thing as a bridge that can’t be crossed but Ralph illustrates there are many broken bridges. His radar for prejudice is acutely sensitive throughout the book, and this is illustrated in the way the public viewed DJ’s behaviors on an airplane, to schools, and sadly, to a visitation with Ellie and the biological father when the latter says,

‘Does he take their tests.? What’s the point of this inclusion stuff, to make the parents feel better about having a retard for a son?’ The man actually used the word ‘retard.’ I don’t’ know if he’d discerned that he was in trouble with his daughter, had exaggerated DJ’s disability, or whether he suddenly felt that he was in trouble with himself….I don’t know if he was merely like so many other people who know nothing about disability and advance a case of prejudice.”

Ralph succeeds by making DJ not only the main character, but gives him his own voice by relaying their computer “conversations” to us, which are recorded meticulously.

“Part of what we were doing was compensating for the autism, but mostly for DJ’s belated emergence. In fact, DJ would end up becoming a great professor of feeling, understanding in its innumerable cultural inflections – all of this a rejoinder to the autism experts and their ‘devastating’ theories.”

In Ralph’s book, we bear witness to this difficult process of adoption, autism, stress, epilepsy, trauma and the struggle to connect and create a family against many odds. One can’t stop thinking of the challenges that adoptive parents take on willingly while others may complain endlessly about the plight of their family because of autism. But Ralph will have none of that. While there is pain, there is never talk of a cure, or of wanting DJ to be anyone other than who he is, except to alleviate the struggle. Like most parents, Emily and Ralph want to help DJ with communication, and to have him happy or at least content despite a life of loss, to hopefully replace it with a life of gain.

For all of his autistic behaviors and inability to talk, DJ is bathed in Ralph and Emily’s considerate light, where all of his actions are interpreted as real communication and thus DJ is returned from a level of subterranean species back to humanity: “Only her goodbyes would provoke the emotional scurrying of a frightened animal or the hiding-in-plain-light routine we’d come to think of as the mind in brilliant camouflage.” Here, Ralph makes reference to DJ’s encounter with his biological mother.

Perhaps Ralph is predisposed to taking care of DJ: “Can one be too serious? Can one still live, as Thoreau once put it, ‘deliberately?’” With all of his self-deprecation and reflection throughout the book, I am convinced that Ralph and Emily’s act to adopt DJ was not to be benevolent for the sake of it, or to bestow pity on DJ, although they truly had strong feelings for what he had been through. It is their persistence and work with DJ that carries the narrative. There is a sense of what’s right and wrong, and justice due to DJ. There is so much pain throughout, and despite all, the triumph is one not only of will, it is one where we watch a child, otherwise lost and forgotten in the world of foster-care, now remembered, celebrated and succeeding as an autistic individual -- and respected no matter what.

The last chapter was left for DJ to write. As a parent of an autistic child, its message struck me as serious, considering the lessons we are learning about autism, and how autistic people best learn:

“Dad has written a book about my fresh start. I’ve written the last chapter. Please read it because in it I write about how years of early lessons were wasted. Why weren’t you teaching me to talk, to read, and to write? All you had to do was awesomely encourage me as smart and really kind, and fresh start really could have begun sooner. Your breathing would make me nervous. People weren’t assuring me as sweet, inspiring me to work at dreaming of typing to responsibility act like everyone deserving respect…Quite pleased that you are respecting and reading this tested-as-smart, growing up boy’s resentment. I live in constant fear that respect will be taken away, and I will have to return to easy years of doing nothing….Reasonable people should each see what they can do to free people who can really understand.”

This is not necessarily a story with a proverbial happy ending which some people come to expect: a miracle cure for autism as it were, or DJ’s journey to “normalcy.” Sadly, DJ and many others like him, will continue to be subject to discrimination, and the anxiety may never really be over. As a daughter of an adopted child, I am also more than aware of the painful, incomplete legacy that lives on inside the adopted one, and how that can even carry on in continuing generations. This is, however, a story about what life is all about: trial, error, perseverance, and faith in people. Faith in love. Ralph, Emily and DJ give us that, and much more.

I hope it's not too unseemly to respond to the comments on Estee's incredibly generous piece on my forthcoming book, REASONABLE PEOPLE. Opponents of facilitated communication are unprepared to confront new evidence that FC works with some--NOT ALL--non-speaking people with autism. Moreover, they simply dismiss (or are unaware of) studies that now support the technique's efficacy with SOME (again, not all) users. Finally, they totally ignore the fact that many users are now typing TOTALLY INDEPENDENTLY, users who had once required facilitation. My book presents a balanced view of FC: it concedes the early studies were indeed devastating (ie. there was plenty of fraudulent communication), but it asks opponents to make sense of new developments. My wife and I are suspicious of the narrative of suddenly discovered ability; we focused on teaching literacy, methodically and laboriously. Once our son could demonstrate his competence by pointing independently at answers on a blackboard, we started using FC--or, rather, we started calling our hand-over-hand typing, which we employed to accustom him to all aspects of typed communication, FC. He has had some 15 facilitators and passed any number of informal message passing protocols. I would insist that PART of the hysterical opposition to FC is really opposition to the notion that non-speaking people with autism are full human beings, capable of elaborate self-expression. New work by Morton Gernsbacher and Lauren Mottron has shown that standard intelligence tests have misread the intelligence of this group. Once a different sort of test is administered, many who were thought retarded score in the normal range. So, if the science is changing with respect to autistic competence, how far-fetched is it NOW to imagine that non-speaking people with autism might be able to communicate? The key is literacy: teach your child how to read, then find a way to overcome all of the motor and proprioceptive problems that make writing, say, so difficult.

I'm no expert on FC, but any doubters could be convinced by the beautifully composed email that DJ sends in correspondence to my daughter, a former classmate of his. It never fails to brighten her day to get a message from him, so beautifully written and heartfelt. I can't wait to read the book, although I know that it will be difficult to do as I read the struggles and pain that this beautiful family endures. Our family admires the Savarese family, and treasures the time spent with them.